End-of-Life Ethics: An Ecological Approach

Introduction

[1] Ever since Childress and Beauchamp (2001) introduced their basic principles of biomedical ethics, they have been widely accepted. Yet, while these basic principles of autonomy, beneficence, nonmaleficence, and justice generally are accepted as a broad ethical frame, the primacy of the concepts have shifted over the years. For many years, beneficence—the principle that the physician should always do what is best for the patients was a dominant ethos. In recent years the principle of autonomy has become primus inter pares (first among equals). Here the wishes of the patient or surrogate supersede the advice of physicians.

[2] Within the last fifty years, not only have these broad ethical principles waxed and waned but there have also been unprecedented advances in end-of-life care. Hospice and palliative care are now available as options. Technological advances in medical care have been extensive. One result of these technological achievements is that we have lost consensus on when life begins and ends. This has fueled ethical debates in such areas as abortion, end-of-life care, and euthanasia.

[3] In this paper, I explore the shift from a Rescue Orientation—supported by the notion of beneficence, to that of a more Individualistic Model that builds on autonomy. I further argue that Jennings’ concept of an Ecological Approach[1] offers an approach that is both ethically sound and congruent with Lutheran theology. Moreover, such an approach is validated by research on ethical decision-making at the end-of-life as well as that on the effects of such decisions on the grief of survivors.

The Rise and Fall of the Rescue Orientation

[4] According to Jennings[2], the Rescue Orientation’s underlying premise was that disease and death are the ultimate enemy. In that orientation, the physician’s primary role is to rescue the patient from those threats—as well as from the patient’s own poor judgment. Based on the principle of beneficence, this orientation spawned a benevolent paternalism. The physician knew best and should operate in the best interests of the patient regardless of the patient’s own preferences for care. Physicians could withhold information or present it in such a way as to direct a decision.

[5] This position was challenged by Scholendorff vs. the Society of New York Hospital in 1919. Here a woman consented to uterine examination. In the course of the examination, the physician decided that his patient needed a hysterectomy. This case placed limits on the physician’s discretion by mandating informed consent—that is that the patient had the right to know what medical procedures were recommended, what risks were present in such procedures, and to consent to treatment.

[6] Despite this case, the rescue orientation still was predominant until the 1960’s.Then, as the Baby Boom came of age, this generation was far less accepting than prior generations on blindly following authority. Baby Boomers value choice and control. Social movements such as death awareness, patient empowerment, and right-to-die movements emphasized the rights of patients to set the conditions of their own end-of-life care. Soon, instruments were developed to assist this process such as Advance Directives. Finally, the rise of hospice offered additional alternatives for end-of-life care.

The Individualistic Orientation

[7] As we moved into the sixties, the rescue orientation gave way to a more individualistic model. In this perspective, the patient is empowered to direct his or her own care. The patient is now considered the ultimate consumer—the disinterested manager of his or her own care. This is seen in surrogacy—that is the individual that one selects to make medical decisions for you in cases where you lack capacity to participate in these decisions. New York State’s Attorney General manual, Planning Your Health Care in Advance, states, “Your agent need not agree with all of your wishes, but must be capable of carrying them out, regardless of his or her own feelings.”[3] In fact current ethical though suggests that surrogates make decisions based on the clear wishes of the patient (when known), or in other situations where wishes are unknown on the basis of what the patient would be likely to do or what is perceived to be in the patient’s best interests. The wishes of the surrogate—or even the patient’s families—are not considered.

[8] This individualistic orientation has found an apex in physician assisted suicide. Here the patient even retains the right, albeit limited by certain restrictions, to end his or her life rather than continue medical treatment. In states where physician assisted suicide is legal, the patient is empowered to make the ultimate choice of life or death. This may presage a challenge to the individualistic orientation. Sorokin[4] noted that one factor in social change is the principle of limits — meaning that any social value inevitably evolves into the more extreme positions that can discredit or cause discomfort with the value setting the stage for some form of a corrective approach.

[9] While this orientation is still current, there is research that challenges its basic premise.

Research[5] has shown that in general people have poor affective forecasting, that is they tend to underestimate their ability to adapt to adversity. They also are likely to exhibit focalism—that is that persons focus more on what will change rather than what will remain the same. In addition, it was also found[6] that individuals experience immune neglect—failing to foresee how their own coping skills will reduce unhappiness even as illness causes additional disability. Finally individuals fail to predict adaptation, meaning that individuals do not recognize how what they value will shift as illness advances.[7] The implication is that advance directives, made when an individual is healthy, may have little relationships to the decisions they might make as they struggle with illness.

[10] This research underscores a debate about the applicability of advance directives once a patient has dementia. It is argued that persons with dementia are so different than they were before that advance directives are not meaningful, others, however, would contend that the wishes should be honored as dementia was likely a consideration when the advance directives were considered.[8]

[11] Other factors too have undermined this individualistic orientation. The development of hospice and palliative care has emphasized the family as a unit of care. This inevitably has highlighted the familial context of ethical decisions—the recognition that end-of-life choices may have implications for family and the larger caring community that extend well beyond the patient’s life.

The Rise of an Ecological Perspective

[12] These factors have led Jennings[9] to propose a Social Ecology Perspective, one that roots ethical decision-making in the context of family and community. In effect, it adds a new principle to bioethics, a relational principle, that affirms that ethical decisions affect others. In essence, the social ecological perspective believes that ethical decisions at end-of-life should be communal—that is, taking into account the effects of varied ethical decisions not only on the patient but also on those in the patient’s world impacted by those decisions.

[13] Two examples illustrate this approach. When I personally consider a surrogate, I have two choices. One would be a life-long friend. (We have known each other since adolescence.) Peers—we have had extensive discussion of our end-of-life choices, and I have no doubt that he would follow my wishes fully. The other choice would be my son. He is reluctant to have conversations about death, which is not atypical of midlife adults as they struggle with their own awareness of mortality.[10] I strongly suspect that he would keep me alive longer than I wish.

[14] From the individualistic perspective, my choice is clear—my friend should be surrogate. Yet the implications of such a decision would be staggering. It would disenfranchise my son—my last message would essentially be one of distrust. It might alienate him from a person that he would look to for support. It would likely complicate his grief. Hence my son is my surrogate. As to the likelihood that I might have to live a bit longer than I prefer? Parents, often make all kinds of sacrifices for their children. This would be my last sacrifice.

[15] Assisted suicide offers another example. In an earlier work[11], I described the complicated case of a person who, at the request of his own terminally ill parent, decided to facilitate the suicide of the parent.. The individual wrote anonymously describing his intense grief and how he felt that he was now effectively disenfranchised. Though he was coping, along with his siblings, with intense guilt and ambivalence over his role in his parent’s death, the illegality of the act inhibited any counseling. His parent’s own decision deeply complicated his grief.

[16] Those two examples illustrate the limits of the individualistic approach and the need for the social ecology perspective. In addition, the social ecology perspective resonates with a spiritual emphasis on community. We are created in relationship to others. Our choices and decisions are not made in a social vacuum. Recognizing the needs and welfare of others, and often sacrificing personal interests to those of others, are values congruent with our faith.

[17] Another strength of this approach is that it is also sensitive to cultural nuances. Western ethics emphasize that the individual is the locus of decision-making and that these decisions should be informed by full medical disclosure. Not all cultures accept these premises.[12] In some cultures, the family is the locus of decision-making. In other cultures, these decisions are still seen as the physician’s. Disclosure may also be inhibited. In some cultures the discussion of serious illness, certain diseases, or death is considered inappropriate or disrespectful. In others, there may be a fear that disclosure could cause depression, anxiety, eliminate hope, or even hasten death. Finally, in certain cultures, words have efficacy in and of themselves. For example, according to Searight and Gaffor, the Inupiaq Peoples of Alaska, express the belief that talking about death, risks, or illness actually brings these events into being. Thus speaking about risks increases the possibility that these risks will occur. Such belief, shared by others as well, can fall into a sense of fatalism that inhibits advance planning. A social ecology perspective, by recognizing context, takes seriously such cultural nuances.

[18] Furthermore, a social ecology approach also acknowledges the complicated and developmental dynamics that can surround the end-of-life process. Among the realities of the dying process, is the sense of what is referred to as middle knowledge[13] —that is, the patients and families drift in out of the awareness of dying, sometimes confronting death while other times ignoring death’s nearness. Moreover, families often have mixed feel​ings even when they acknowledge death’s immediacy. Families are conflicted by the desire to remain in the moment with the patient, a hope that death may be forestalled, as well as a desire to find some sort of resolution even in death. Finally, families may experience a sense of anticipatory grief as they cope with all the losses associated with the end stage of a debilitating illness. Such emotional conflict can immobilize decision-making. An inherently inclusive process, the social ecology perspective encourages discussion between family members and seeks to enable consensus even if that takes time.

[19] Finally, a social ecology perspective facilitates the grieving process. If individuals and staff are troubled by the end-of-life decision, this ambivalence complicates grief while an inclusive process that acknowledges all stakeholders facilitates the grieving process for both families and staff.[14]

Conclusion

[20] In many ways the move toward an ecological system of care is an inevitable result of the limits posed by both technology and an increasingly individualistic model. Patients and families now have an array of bewildering choices that come with considerable personal and economic costs. Seamlessly transitioning patients to palliative or hospice care when cure or meaningful extension of life is no longer viable is best managed in a context where physicians, medical caregivers, families, and patients are freely offered information and opportunities for discussion in ways respectful of cultural mores, spiritual values, and family dynamics. But perhaps most importantly, it is a model that offers an essential corrective to our current ethical principles by taking seriously a fundamental element of our theology—even of our basic humanity—that we exist in relation to others.

   
NOTES

[1] B. Jennings, “From rights to relationships: The ecological turn in ethics toward the end-of-life” in Ethics: A case study approach, K. Doka, A. Tucci, C. Corr, and B. Jennings, eds. (Washington, DC: The Hospice Foundation of America, 2012), 3-22.
[2] Ibid.
[3]http://www.ag.ny.gov/sites/default/files/pdfs/publications/Planning_Your_Health_Care_in_Advance.pdf
[4] P. Sorokin, Social and cultural dynamics, four volumes (New York: American Book Company, 1937–41).
[5] J. Halpern and Arnold. R., “Affective forecasting: An unrecognized challenge in making serious health decisions,” Journal of General Internal Medicine,23 (2008): 1708–1712.
[6] Ibid.
[7] Ibid.
[8] J. Kapo & J. Karlawish, “Ethical challenges for end-of-life care for dementia patients,” in Living with grief: Alzheimer’s disease, K. Doka ed. (Washington, DC: The Hospice Foundation of America, 2004) 255-267.
[9] Jennings, “from Rights to relationships.”
[10] Ken J. Doka, “The awareness of mortality in mid-life: Implications for later life” in The awareness of mortality, ed. J. Kauffman (Amityville, NY: Baywood, 1995).
[11] Ken J. Doka, ed., Disenfranchised grief: New directions, challenges, and strategies for practice (Champaign, IL: Research Press, 2002).
[12] The examples of cultural nuances in this paragraph are taken from Searight, H.R. and Gafford, J., “Cultural diversity at the end of life: issues and guidelines for family physicians,” American Family Physician 71, no. 3 (2005): 515-522.
[13] A. Weisman, On dying and denying: A psychiatric study of terminality (New York: Behavioral Publications, 1972).
[14] A. Jameton, “Dilemmas of moral distress: Moral responsibility and nursing practice,” AWHONNS Clinical Issues in Perinatal & Women’s Health Nursing, 4 (1993) 542-551; K.J. Doka, “Caregiver distress: If it so ethical, why does feel so bad?” Critical Issues in Clinical Care Nursing, 5 (1994) 346-7; idem., “Ethics, end-of-life decisions, and grief,” in Ethics: A case study approach, eds., K. Doka, A. Tucci, C. Corr, and B. Jennings (Washington, DC: The Hospice Foundation of America, 2012) 261-271.